Abstract
We implemented a distributed system for management of data for an international collaboration studying Fetal Alcohol Spectrum Disorders (FASD). Subject privacy was protected, researchers without dependable Internet access were accommodated, and researchers’ data were shared globally. Data dictionaries codified the nature of the data being integrated, data compliance was assured through multiple consistency checks, and recovery systems provided a secure, robust, persistent repository. The system enabled new types of science to be done, using distributed technologies that are expedient for current needs while taking useful steps towards integrating the system in a future grid-based cyberinfrastructure. The distributed architecture, verification steps, and data dictionaries suggest general strategies for researchers involved in collaborative studies, particularly where data must be de-identified before being shared. The system met both the collaboration’s needs and the NIH Roadmap’s goal of wide access to databases that are robust and adaptable to researchers’ needs.
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References
Barr, H.M., Streissguth, A.P.: Identifying maternal self-reported alcohol use associated with fetal alcohol spectrum disorders. Alcohol Clin Exp. Res. 25, 283–287 (2001)
Streissguth, A.P., O’Malley, K.: Neuropsychiatric implications and long-term consequences of Fetal Alcohol Spectrum Disorders. Semin Clin Neuropsych 5, 177–190 (2000)
Sampson, P.D., Streissguth, A.P., Bookstein, F.L., Little, R.E., Clarren, S.K., Dehaene, P. et al.: Incidence of fetal alcohol syndrome and prevalence of alcohol-related neurodevelopmental disorder. Teratology 56(5), 317–326 (1997)
Hartswood, M., Jirotka, M., Slack, R., Voss, A., Lloyd, S.: Working IT out in e-Science: Experiences of requirements capture in a Healthgrid project. In: Proceedings of Healthgrid, pp. 198–209. IOS Press, ISBM (2005)
Mattes, W.B., Pettit, S.D., Sansone, S., Bushel, P.R., Waters, M.D.: Database Development in Toxicogenomics: Issues and Efforts. Environmental Health Perspectives 112, 495–505 (2004)
Stein, H.D., Nadkarni, P., Erdos, J., Miller, P.L.: Exploring the Degree of Concordance of Coded and Textual Data in Answering Clinical Queries from a Clinical Data Repository. Am. Med. Inform Assoc 7, 42–54 (2000)
Brindis, R.G., Fitzgerald, S., Anderson, H.V., Shaw, R.E., Weintraub, W.S., Williams, J.F.: The American College of Cardiology-National Cardiovascular Data Registry (ACC-NCDR): building a national clinical data repository. J. Am. Coll. Cardiol 37, 2240–2245 (2001)
CAS basics (2006) http://uits.iu.edu/scripts/ose.cgi?akui.def.help
The Indiana University Massive Data Storage System Service (2006) http://storage.iu.edu/ mdss.shtml
High Performance Storage System (2006) http://www.hpss-collaboration.org/hpss/index.jsp
Indiana’s Optical Fiber Initiative – I-Light (2006) http://www.i-light.iupui.edu
May, P.A., Gossage, J.P., White-Country, M., Goodhart, K., Decoteau, S., Trujillo, P.M., Kalberg, W.O., Viljoen, D.L., Hoyme, H.E.: Alcohol Consumption and Other Maternal Risk Factors for Fetal Alcohol Syndrome among Three Distinct Samples of Women before, during, and after Pregnancy: The Risk Is Relative. Am. J. Med. Genet. C. Semin. Med. Genet. 127, 10–20 (2004)
Hoyme, E.H., Fagerlund, Å., Ervalahti, N., Loimu, L., Autti-Rämö, I.: Fetal alcohol spectrum disorders in Finland: Clinical delineation of 77 older children and adolescents and comparison with affected North American children. Presented at the Western Society for Pediatric Research (February 2005)
Flury-Wetherill, L., Foroud, T., Rogers, J., Moore, E.: The CIFASD Consortium, Fetal Alcohol Syndrome and 3-D facial imaging: Differences among three ethnic groups. Poster presentation at 29th Annual Research Society on Alcoholism Scientific Meeting, Baltimore, MD (June 23-29, 2006)
TeraGrid, http://teragrid.org (2006)
NIH Roadmap for medical research – Overview of the NIH Roadmap, http:// nihroadmap.nih.gov/overview.asp (2006)
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Arenson, A. et al. (2007). Implementation of a Distributed Architecture for Managing Collection and Dissemination of Data for Fetal Alcohol Spectrum Disorders Research. In: Dubitzky, W., Schuster, A., Sloot, P.M.A., Schroeder, M., Romberg, M. (eds) Distributed, High-Performance and Grid Computing in Computational Biology. GCCB 2007. Lecture Notes in Computer Science(), vol 4360. Springer, Berlin, Heidelberg. https://doi.org/10.1007/978-3-540-69968-2_4
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DOI: https://doi.org/10.1007/978-3-540-69968-2_4
Publisher Name: Springer, Berlin, Heidelberg
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